Originally Posted by glenntaj

--that I've found in case report medical literature that experienced an acute-onset (as in hours), full-body, small-fiber Guillain Barre like syndrome, though I suspect that this is probably somewhat more common than reported. (I don't think many neurologists recognize it and it is hard for patients experiencing it to explain what is happening--the vocabulary for nerve pain is very difficult. I used to say "imagine you get a sudden sunburn all over your entire body and the someone rubs it with steel wool".)

I don't have a lot of time this morning, but one can definitely read about my journey here at Neurotalk (and in a lot of other places; I've been very public about all this since it started back on April 11 2003).

In sum, though, the peak of symptomology lasted about 4-6 months, though I was fortunately more functional after ramping up to a rather high dose of Neurontin early in the journey--fortunately that drug helped me considerably. In the early stages I couldn't even wear clothing, as the burning pain was both spontaneous and easily induced, even by a breeze.

Very exhaustive investigations did not reveal a cause; I had normal results on all tests, except on skin biopsy, which did show small fiber neuropathy. Autoimmune mechanisms were suspected, but not proven. The usual idea with these cases is molecular mimicry--the body is invaded by a pathogen, fights it off with an immune response, but the pathogen's molecular shape is similar to that of some bodily tissue and the now activated immune system cannot distinguish friend from foe (a lot of immune system response is shape-based or "key-in-lock"), so that bodily tissue gets attacked. In my case it seems it was small fiber nerve. I never had any apparent large fiber involvement or motor symptoms.

I did notice small improvement towards the end of the first year, and it is typical of these syndromes to result in very slow, partial, patchy recovery. And yes, one gets all sorts of weird sensations as nerves regrow--as I often write, it's touch to distinguish these from worsening, except in long term retrospect.

I'm about 85-90% recovered, and this is montiored with skin biopsies every two years. My intraepidermal nerve fiber density increased considerably over the first decade and has stabilized now, though who knows if it got back to what it would have been originally, had I been tested when "normal". (No one gets a skin biopsy for NO symptoms, except the original norming cohorts.) But, yes, I've gotten intermittent flares over the years, and I am of course subject to all sorts of compressive effects as I've described, probably having more symptoms from those than a "normal" person would have (such as from spinal foraminal compromise, which I do have a lot of in my neck/cervical spine--separate issue, but it wouldn't be as bad, we think,if the syndrome hadn't happened).

It sounds like you may have experienced something analagous, and with some autonomic aspects added in--since many autonomic functions are small fiber controlled, having autonomic symptoms is not uncommon in small fiber syndromes, acute or chronic.